GNB1 Advocacy Group

We are the Board Members of the GNB1 Advocacy Group. We are parents to children who have a mutation in their GNB1 gene, which is a protein gene that sends messages to cells all over the body. Our children are affected in varying degrees and varying ways, but primarily with developmental delays, neuromuscular issues, and seizures.

We are working with researchers worldwide, including at McGill University in Canada, to hopefully find a cure for this genetic mutation in our children's lifetimes. At present, we are seeking to fund the running of our nonprofit organization in the United States to facilitate formal collaboration with the researchers, including beginning to collect data and bio samples at C-BIG, which is a secure repository through McGill. We are also seeking funding to establish our natural history study.

Our mission statement is: Dedicated to GNB1 awareness and support, our nonprofit unites families impacted by this rare genetic disorder. We connect parents, facilitate collaboration with researchers, and provide crucial resources. Our mission is to foster a network that empowers and advances understanding, ultimately enhancing the lives of those affected by GNB1.